VIEW UNDER FUNDED LUNG CANCER TRIALS AROUND THE WORLD

[ffsantini]

My name is Hulya and I have lost my husband at the beginning of this year. We, my husband and I never heard of Lung cancer compared to Breast Cancer and did not know what to expect from the professional world of medicine. I am still in shock how any Lung Cancer is treated by the health system. It is shocking in most way I thought it cannot exist.

Firstly, the diagnosis of how long it takes in the UK to treatment (my husband was 2-3 month) or better said the non screening of risk assessed patients. All the money to advertise not to smoke could be used to find early screening and treatments. We are underfunded and need a spokes person maybe a musician as they need a healthy per of lungs.

Secondly, the oncologists who I have met are something I thought could not exist. All of them are rankest, which mean they would not in any kind of circumstances voice their indifferences opinion to save a patient. I have sadly experienced first hand by Oncologist in Windsor, Oxford and Great Ormond Street Hospital. My husband was treated by an Italian Oncologist who treated him with respect and fought beside him but husband decided to come back because he wanted to be with his family.

The first oncologist told him 'straight' and "not personal" you will never be a grandfather and die in 9 month. By God how I did do something I would regret ( I doubt that) I still do not know. His determination to make his prediction is scary. I will not dwell on his for now.

Thirdly, I am so concerned on how much death related organisations for cancer do fail the patient in so many levels such as the MACMILLAN cancer care nurses do not listen of the wishes, instead support the NHS or the Oncologist like the "specialist LUNG NURSES"? I still am so wary of these people not because they talk to you in slow quite condescending manner but talk as we were children. To be honest I felt most the time annoyed with the MacMillan nurses given to us as she went on holiday to Australia for three weeks while my husband went twice into hospital during the Christmas period, guess what she was promoted.I am sure we were difficult to handle or maybe only me.

The Lung cancer nurse was just out of Oliver Twist, unapproachable. She completed was unsympathetic, unfriendly and very stern to follow the guidelines and as for support absolute useless.

Bringing it to end my husband was treated as he had no voice or choice in controlling his wishes we were just a number who paid faithfully for 30 the NHS and let to die! If this is offensive then I suggest to take the "PINK GLASSES" OFF!

For all those who fight LUNG CANCER you are my heros.

with lots of hugs and kisses

yours in faith

Hulya Santini

[eric byrne]

Hi Hulyia,

A warm welcome to LCSC,may I venture to say,from my experience of everyone here,you will find quite a pleasant difference to the experience you had with the medical support you had in caring for your husband.

I am a fellow Brit-well Scottish actually,I dont know from which part of the UK,you hail from,but we do share the same National Health System.

Boy, that was some story you shared,if ever there was one that so describes the complete failure of a medical support system,it would be hard to beat yours.

I am so sorry to hear from you about the loss of your husband,its such a shame you didnt find this site at the outset, I am sure you would have received not only friendship and love,but a lot of excellent advice in how to deal with each step you faced with your husband, as he progressed through his care plan,or more appropriately in your case,a lack of care plan.

I do think in any organisation,there are some people who are failing to meet the basic requirements of their job.If you go to the shops, grocers,butchers whatever,if they dont meet your expectations of quality in service or goods,what do you do?right- you shop elsewhere.It is different isnt it when you have to deal with a huge organisation like the NHS.

My experience was a bit of a mixed bag,from excellent to poor in the extreme fortunately for me the excellent was the people that really mattered to my successful treatment eg my respitory doctor, Dr Farmer and my oncologists Drs Mclaren and Dr Lumsden,without them on my side,who knows?.The others I will not name,to save their blushes is my own GP,and Lung Nurse who gave me only two years to live,shame on them.They both now have egg on their faces,since I am now past my seel by date,just to spite them, I am going to stay around for the next twenty years(at least).

What about your experience?2-3months to begin treatment,shocking!!!,me two days?why?

Lung Nurse?,snap we share the same experience,more than just a waste of space,if I were her line manager,she'd be looking for another job.

Oncologist giving out life sentences?another one for the sack,others in three different hospitals could be unsympathetic and uncaring?.Really for your husband not to be included in the doctors discussions about his course of treatments,is unforgivable.

Lastly but not least,an organisation I have contributed to financially and had total faith in,to have treated you with such disrespect,leaves me angry.

My opinion for what it is worth,is you should carefully draft a letter of complaint to the relevent Health Board,seeking some redress,it may well be that such a letter might prevent others facing your experience in the future.

I hope you will stay around and make so lovely new friends here.

Best Wishes,

Eric.